How to help a loved one with sickle cell disease

How can you help a loved one with sickle cell disease? As a patient, I’m asked this question frequently, especially when I’m unwell.

The reality is that there’s no single grandiose action that will help people living with sickle cell disease. I’d challenge loved ones to think smaller, as it’s the little things that can make a world of difference.

My partner recently demonstrated this ahead of our trip to Jamaica. When I book a vacation, the excitement tends to be short-lived. I quickly remember the stress of jumping through the requisite hoops of fire to be permitted to fly with everything I need to stay healthy and safe while abroad.

Before our trip, my partner took on all of that stress without me even asking. He liaised with the airline, shopped around for the portable oxygen concentrator batteries I needed, and arranged the rental of this equipment. He printed and completed all the necessary forms, too. He did everything in his power to reduce the stress of vacation planning for me.

It was extremely helpful, as I was dealing with a lot of work stress at the time. Because stress is a major crisis trigger, the travel planning could have easily triggered a sickle cell crisis for me. In fact, I’m almost certain it would have.

It’s heartwarming to know that my partner took on extra responsibilities to help me avoid a crisis. His small gesture paid major dividends for me and helped me to remain healthy enough to enjoy our trip.

Similarly, I shared recently that a new manager at work has introduced many small changes that have made my working life easier.

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My advice

Helping a loved one with sickle cell need not be a monumental task. Think about the parts of their day they find annoying or tiring and consider how you can help with those.

For example, although I enjoy cooking, I’d give anything for someone else to sort out my meals on days when I’m struggling with pain or lethargy. When I’m ill, I’m more inclined not to eat, but that is when my body needs good food the most. I should also have food in my stomach if I’m taking pain relief medication. Even a small gesture or time investment can make a big difference for your loved one with sickle cell.

You can also help by being flexible with social plans and not making the sickle cell patient feel bad if plans need to be changed.

And whenever possible, be available. Available to accompany your loved one to hospital appointments. Available to spend time with them physically or virtually, particularly if they’re feeling unwell or lonely. Available to listen without judgment, because even though sickle cell is a physical disease, it can — and often does — impact our mental health. (Of course, be sure to look after yourself, too. If your friend is experiencing poor mental health, perhaps talk with them about seeking professional help.)

Lastly, educate yourself about sickle cell disease and speak with your loved one to better understand how the condition affects them. Remember, sickle cell affects each patient differently, so the expert on your loved one’s health is — you guessed it! — your loved one.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.